Re: Meeting the needs of patients with learning disabilities
While the recommendations for remediation of systemic quality issues made by the Confidential Inquiry into Premature Deaths of People with Learning Disabilities have great value and should be acted upon in the short term, the process of inquiry into the deaths of people with learning disabilities in the U.K. should not be considered complete. Implementation of these recommendations is only the first step for establishing a more robust system of surveillance and timely intervention that can guide initiatives for the prevention of avoidable deaths and improvement in quality of life for people with learning disabilities. The Inquiry’s recommendation to establish a national learning disability mortality review body is equally as important as the other recommendations. The recent editorial by Sheila Hollins and Irene Tuffrey-Wijne provides important additions to the Inquiry’s call for such a review body. In the U.S., we have found mortality review by established boards to be an important tool for ensuring the health and welfare of people with learning disabilities and for creating ongoing public accountability with public and private systems of service and support to this population. In 2008, the U.S. Government Accountability Office conducted a review of state public disability agencies and recommended that the federal government mandate all states to report deaths of people with learning disabilities and encourage states to conduct mortality reviews for this population which they found were “vulnerable because of their cognitive and physical impairments and dependency on caregivers for assistance…” (1).
In the U.S., many public learning disability services systems have been conducting structured mortality reviews for people with learning disabilities for well over a decade. While these reviews allow for the identification of abuse and neglect on an individual level, perhaps more importantly, the process can identify important issues about the safety and quality of services and supports and responsiveness of health care. Reviews done in an open and transparent fashion better ensures public accountability. Requirements for mortality review also allow for the identification and sharing of examples of quality, e.g., where people with learning disabilities have been treated with dignity and were well-supported to make difficult decisions about their own health care. A standard process of mortality review for this vulnerable population enhances the potential for widespread learning throughout the service system, and allows for strategic targeting of efforts to remediate systemic issues affecting quality of care.
We would like to emphasize that, in our experience assisting a number of U.S. states design, implement, maintain and utilize findings from learning-disability-specific mortality review systems, such a board must be supported by an infrastructure within the NHS for it to effect meaningful change. Specifically, there must be both an accurate and consistent pathway for deaths of people with learning disability to be identified and submitted for review. Additionally, there must be a clear expectation that recommendations will be evaluated and considered within the NHS. It is important that the review board process represent a commitment for continuous and long-term review and quality improvement and not be established on a temporary and limited basis.
We recognize that in the U.S. there remain too many egregious examples of neglect, unequal access to care, and individual and systemic failures to meet basic and essential needs for people with learning disabilities. However, in the U.S., we have seen a number of improvements in the health and social care for people with learning disabilities over the past few decades as evidenced in part by stable increases in life expectancy (2,3,4,5). And while important progress has been made, as conditions change, new issues emerge. As life expectancy has increased, so has the likelihood of people with learning disabilities experiencing age-related and chronic conditions such as dementia and cardiovascular disease that were historically less prevalent in this population than in the general population. (6,7). With this shift comes an increased need for different types of care, such as palliative and hospice care – challenging generic service systems that before had far less need to provide such services and now must adapt to provide this support people with a range of functional limitations. For instance, recent literature points to a variety of barriers for people with learning disabilities that compromise their receipt of optimal care at the end of life (7,8). Ongoing mortality review can play an important role in identifying barriers to care such as these and well as guiding potential solutions.
Despite the progress in life expectancy, in the U.S. we continue to see similar patterns in the life expectancy of people with learning disabilities to those found in the Confidential Inquiry. And despite substantially different health service models, the U.S. has numerous disparate care issues similar to those identified in the Inquiry. The presence of a learning disability puts people at increased risk for a “cascade” of disability, starting with a greater baseline risk for adverse conditions that are compounded by inadequate attention to health care needs and limited access to quality care and support (9). Research also suggests that clinical and preventive health practices have the potential to delay the onset or lessen the impact of many age-related diseases and secondary conditions that can affect older persons in this population. (5)
The review of deaths of people with learning disabilities in the U.S. has been able to identify numerous areas for systemic change, particularly in the interaction with the generic health and allied health service systems. Examples include the development of preventive health standards specifically for adults with learning disabilities (10), initiatives to improve communications about health issues between social and medical care providers (11), elimination of policy barriers to the provision of palliative care in certain service settings (12), and better models to support people with multiple complex chronic conditions. Certainly, challenges persist, such as the need for community-based options for aging in place (5,11), but through systematic mortality review, together with other assertive methods for the monitoring, review and improvement of services and supports we are better able to understand these challenges and gather the evidence needed to direct effective change.
References:
1. Medicaid Home and Community-based Waivers: CMS Should Encourage States to Conduct Mortality Reviews for Individuals with Developmental Disabilities, United States Government Accountability Office, Report to the Ranking Member, Committee on Finance, U.S. Senate GAO-08-529, 2008 May 23.
2. Pollack HA. Health Policy and the Community Safety Net for Individuals with Intellectual Disability. Dev Disabil Res Rev. 2011; 17: 44 – 51.
3. Eyman R, Call T, White J. Life expectancy of persons with Down syndrome. Am J Ment Retard. 1991;95: 603–612.
4. Strauss D, Eyman R. Mortality of people with mental retardation in California with and without Down syndrome, 1986– 1991. Am J Ment Retard, 1996;100: 643–653.
5. Janicki MP, Dalton, AJ, Henderson CM, Davidson PW. Mortality and morbidity among older adults with intellectual disability: health services Considerations. Disabil Rehabil. 1999;21(5/6): 284-294.
6. Jenkins R. Older people with learning disabilities, part 1: Individuals, ageing and health. Nurs Older People. 2005;16(10):30–34.
7. Ryan KR, McQuillan R. Palliative care for disadvantaged groups: People with intellectual disabilities. Prog Palliat Care. 2005;13(2): 70–74.
8. Friedman SL, Helm DT, Woodman AC. Unique and Universal Barriers: Hospice Care for Aging Adults with Intellectual Disability. Am J Intellect Dev Disabil. 2012;117(6):509–532.
9. Krahn GL, Hammond L, Turner A. A cascade of disparities: Health and health care access for people with intellectual disabilities. Ment Retard Dev Disabil Res Rev. 2006;12:70–82.
10. Massachusetts Department of Developmental Services. Massachusetts Department of Developmental Services adult screening recommendations 2012. Boston (MA): Massachusetts Department of Developmental Services. 2012.
11. McGaughey M. Connecticut’s system for reviewing the deaths of individuals with intellectual disabilities: lessons learned from 10 years of mortality reviews and investigations. Office of Protection and Advocacy for Persons with Disabilities, 2012. Available from: www.ct.gov/opapd/lib/opapd/documents/adobe/reports/full_report_-_10_year....
Rapid Response:
Re: Meeting the needs of patients with learning disabilities
While the recommendations for remediation of systemic quality issues made by the Confidential Inquiry into Premature Deaths of People with Learning Disabilities have great value and should be acted upon in the short term, the process of inquiry into the deaths of people with learning disabilities in the U.K. should not be considered complete. Implementation of these recommendations is only the first step for establishing a more robust system of surveillance and timely intervention that can guide initiatives for the prevention of avoidable deaths and improvement in quality of life for people with learning disabilities. The Inquiry’s recommendation to establish a national learning disability mortality review body is equally as important as the other recommendations. The recent editorial by Sheila Hollins and Irene Tuffrey-Wijne provides important additions to the Inquiry’s call for such a review body. In the U.S., we have found mortality review by established boards to be an important tool for ensuring the health and welfare of people with learning disabilities and for creating ongoing public accountability with public and private systems of service and support to this population. In 2008, the U.S. Government Accountability Office conducted a review of state public disability agencies and recommended that the federal government mandate all states to report deaths of people with learning disabilities and encourage states to conduct mortality reviews for this population which they found were “vulnerable because of their cognitive and physical impairments and dependency on caregivers for assistance…” (1).
In the U.S., many public learning disability services systems have been conducting structured mortality reviews for people with learning disabilities for well over a decade. While these reviews allow for the identification of abuse and neglect on an individual level, perhaps more importantly, the process can identify important issues about the safety and quality of services and supports and responsiveness of health care. Reviews done in an open and transparent fashion better ensures public accountability. Requirements for mortality review also allow for the identification and sharing of examples of quality, e.g., where people with learning disabilities have been treated with dignity and were well-supported to make difficult decisions about their own health care. A standard process of mortality review for this vulnerable population enhances the potential for widespread learning throughout the service system, and allows for strategic targeting of efforts to remediate systemic issues affecting quality of care.
We would like to emphasize that, in our experience assisting a number of U.S. states design, implement, maintain and utilize findings from learning-disability-specific mortality review systems, such a board must be supported by an infrastructure within the NHS for it to effect meaningful change. Specifically, there must be both an accurate and consistent pathway for deaths of people with learning disability to be identified and submitted for review. Additionally, there must be a clear expectation that recommendations will be evaluated and considered within the NHS. It is important that the review board process represent a commitment for continuous and long-term review and quality improvement and not be established on a temporary and limited basis.
We recognize that in the U.S. there remain too many egregious examples of neglect, unequal access to care, and individual and systemic failures to meet basic and essential needs for people with learning disabilities. However, in the U.S., we have seen a number of improvements in the health and social care for people with learning disabilities over the past few decades as evidenced in part by stable increases in life expectancy (2,3,4,5). And while important progress has been made, as conditions change, new issues emerge. As life expectancy has increased, so has the likelihood of people with learning disabilities experiencing age-related and chronic conditions such as dementia and cardiovascular disease that were historically less prevalent in this population than in the general population. (6,7). With this shift comes an increased need for different types of care, such as palliative and hospice care – challenging generic service systems that before had far less need to provide such services and now must adapt to provide this support people with a range of functional limitations. For instance, recent literature points to a variety of barriers for people with learning disabilities that compromise their receipt of optimal care at the end of life (7,8). Ongoing mortality review can play an important role in identifying barriers to care such as these and well as guiding potential solutions.
Despite the progress in life expectancy, in the U.S. we continue to see similar patterns in the life expectancy of people with learning disabilities to those found in the Confidential Inquiry. And despite substantially different health service models, the U.S. has numerous disparate care issues similar to those identified in the Inquiry. The presence of a learning disability puts people at increased risk for a “cascade” of disability, starting with a greater baseline risk for adverse conditions that are compounded by inadequate attention to health care needs and limited access to quality care and support (9). Research also suggests that clinical and preventive health practices have the potential to delay the onset or lessen the impact of many age-related diseases and secondary conditions that can affect older persons in this population. (5)
The review of deaths of people with learning disabilities in the U.S. has been able to identify numerous areas for systemic change, particularly in the interaction with the generic health and allied health service systems. Examples include the development of preventive health standards specifically for adults with learning disabilities (10), initiatives to improve communications about health issues between social and medical care providers (11), elimination of policy barriers to the provision of palliative care in certain service settings (12), and better models to support people with multiple complex chronic conditions. Certainly, challenges persist, such as the need for community-based options for aging in place (5,11), but through systematic mortality review, together with other assertive methods for the monitoring, review and improvement of services and supports we are better able to understand these challenges and gather the evidence needed to direct effective change.
References:
1. Medicaid Home and Community-based Waivers: CMS Should Encourage States to Conduct Mortality Reviews for Individuals with Developmental Disabilities, United States Government Accountability Office, Report to the Ranking Member, Committee on Finance, U.S. Senate GAO-08-529, 2008 May 23.
2. Pollack HA. Health Policy and the Community Safety Net for Individuals with Intellectual Disability. Dev Disabil Res Rev. 2011; 17: 44 – 51.
3. Eyman R, Call T, White J. Life expectancy of persons with Down syndrome. Am J Ment Retard. 1991;95: 603–612.
4. Strauss D, Eyman R. Mortality of people with mental retardation in California with and without Down syndrome, 1986– 1991. Am J Ment Retard, 1996;100: 643–653.
5. Janicki MP, Dalton, AJ, Henderson CM, Davidson PW. Mortality and morbidity among older adults with intellectual disability: health services Considerations. Disabil Rehabil. 1999;21(5/6): 284-294.
6. Jenkins R. Older people with learning disabilities, part 1: Individuals, ageing and health. Nurs Older People. 2005;16(10):30–34.
7. Ryan KR, McQuillan R. Palliative care for disadvantaged groups: People with intellectual disabilities. Prog Palliat Care. 2005;13(2): 70–74.
8. Friedman SL, Helm DT, Woodman AC. Unique and Universal Barriers: Hospice Care for Aging Adults with Intellectual Disability. Am J Intellect Dev Disabil. 2012;117(6):509–532.
9. Krahn GL, Hammond L, Turner A. A cascade of disparities: Health and health care access for people with intellectual disabilities. Ment Retard Dev Disabil Res Rev. 2006;12:70–82.
10. Massachusetts Department of Developmental Services. Massachusetts Department of Developmental Services adult screening recommendations 2012. Boston (MA): Massachusetts Department of Developmental Services. 2012.
11. McGaughey M. Connecticut’s system for reviewing the deaths of individuals with intellectual disabilities: lessons learned from 10 years of mortality reviews and investigations. Office of Protection and Advocacy for Persons with Disabilities, 2012. Available from: www.ct.gov/opapd/lib/opapd/documents/adobe/reports/full_report_-_10_year....
12. HCBS Quality Forum: Mortality Review Part II. National Home and Community Based Services Quality Enterprise. 2012 Sep 27. Available from: http://www.nationalqualityenterprise.net/nqe?uid=F7F6E30655C89CE06B6B025...
Competing interests: No competing interests